See you in the New Year!

I hope everyone is having a good storm weekend! We are doing fine and fortunately our power is going strong.

I will be taking a two week blogging break from today as I will be busy with family and Christmas and eating peanut butter balls for the next two weeks. Obviously if something major happens, I will keep you posted!

See you all in 2014! 

Happy Solstice!

Happy Winter Solstice!

The solstice marks the start of the traditional holiday festivities we will be missing by being here  as Isaiah's family has a solstice party every year that we usually attend. It will be my first Christmas away from home. I guess it had to happen at some point and it usually happens earlier than this for most people.

I'm actually kind of excited to see what a quiet Christmas is like without crazy amounts of cooking or driving madly back and forth from Isaiah's family to mine on Christmas Day. It will be different. But then my brother and wife are flying in Christmas Day and my parents are arriving a few days later so there will be no shortage of family around! 

Art lessons!

My Christmas/Birthday present from my parents this year is art lessons! I've had three lessons so far and it is pretty stupendous. The first lesson was on drawing/shading, the second was more drawing with a few painting exercises, and the third was painting the drawing from week two. Next week I will finish that painting and then move onto landscapes. Eek! Thanks Mom and Dad!

I drew some fruit!

Painting to be finished next Monday.

'Tis the season for Peanut Butter Balls!

Time for some Christmas baking! I love peanut butter balls so much, I really should make them outside of December. Now to somehow eat them all before Isaiah gets to them.

Balls pre-chocolate.

Post chocolate! Yum!

I had too much melted chocolate so I mixed up some more peanut butter + rice krispies, put it in the bottom of the muffin cups, and poured the chocolate on top. I'm sure they will be delicious too.

No more Rudolph!

The music at physio is driving me crazy! Usually they just softly play classic rock so I can block it out with my headphones but the last few weeks they have been blasting the Christmas radio station and I can't get away from it.

I'm not anti-Christmas music but it isn't exactly the most inspiring work out music. Nothing like Frosty to get you in the mood to lift weights! What they need is some Christmas workout music. Someone could make a lot (ok maybe not a lot) of money tapping into that market!

I demand only techno Rudolph from now on!

Santa brings lungs?

At the gym last week, I heard a few people say that "they have been good so they hope Santa brings them some lungs." For some reason made me feel really sad. Not because I think these people actually believe Santa will bring them lungs, but it hit me that while they were wishing for new lungs from Santa, in another part of the hospital, a different family is hoping Santa will bring them a Christmas miracle.

It usually doesn't bother me about the fact that someone will have to die in order for me to have my transplant. I think it is because I will have distance from the other family and have no part in the donors life or death. It is easy to deal with because I see it as a random part of life over which I have no control. It is an unfortunate part of the donor process but if I can benefit from someone's death, I'm not going to pass that up.

However, for some reason actively wishing on a time frame, somehow makes the other family and the other side of the transplant seem more real. It seems more like "I hope someone dies over Christmas so I can get some Christmas lungs". And that doesn't seem very Christmas-y. I don't want anyone wish a horrible festive season on anyone.

I realize that people didn't mean it that way and I'm sure I'm over thinking it wayyy too much. I even find it weird that the comment made me feel this way as I make inappropriate 'where the lungs come from' jokes more than I should. However, I shouldn't be surprised that at some point I would be forced to actually consider the real implications of the other side of the transplant process.

Tiny Coffee Cup Cozy

I haven't been knitting too much lately as I've had other projects plus a visitor last week (yay excuse to dine out and go to new museums!...not that I really need an excuse...) However, I did want to make a coffee cup cozy for a certain someone who goes to Starbucks a lot in time for Christmas. Since my hat disaster, I thought maybe I should actually follow the pattern this time. So I did. And it still turned out too small. Argggg!!

I tried putting it on a cup to stretch it out but it didn't stretch very much. No coffee cup cozies for anyone this Christmas!

To be used only with tiny cups.

What will I be doing next June?

I have been working on a DIY wedding project this week for my friends wedding in June. When I agreed to be listed, I resigned myself to the fact that I probably wouldn't make it to her wedding or to the other wedding of friends happening in May. I assume I will either be still waiting or in recovery mode by the time their weddings role around. However, I still have been trying to keep some hope that I can be there so I haven't 100% ruled it out yet.

Then last week at physio, there was a person talking about how they told his doctor they would like to be at their child's graduation in April and that the doctor had given them hope by saying he would get them there. While I think that is a ridculous thing for the doctor to say unless he knows something more about this system than me, it does give me hope that maybe I will be at the weddings after all. Although I'm not going to start booking flights home just yet. 

There is another person at physio who said they decided in the fall not to go on their annual southern Christmas vacation as they didn't want to take themselves off the transplant list for a week and they thought if they had the surgery, they wouldn't be discharged from the program before Christmas. That person is being discharged this week and could have totally gone on vacation so should have bought a ticket. So really there is no way of knowing how to plan anything. It drives me crazy! I like having a plan! 

So many paper hearts!

Book Clock

Last year for Christmas, I made a 'book clock' for my sister. She was confused when she opened it as she thought it was the actual book and didn't understand why it wouldn't open but I think it ultimately won her over (If you are bothered by old books being cut up, you should stop reading). I thought it was time I shared it with you as you prepare for the holidays. Homemade gifts are the best!

My test attempt. Not too bad but the clock part was wide so the book wouldn't close
(Mom got this version for the school library).

The book pre-crafting.

I use an exacto knife to cut a hole in the pages. Used modpodge to glue all the pages together once the clock fit comfortably and covered the damage with some parts of a page. After I punched a hole in the cover with a pen for the clock bits to fit, I duct taped the clock to the back of the book and stuck the hands back on. The cover was a bit thick so the hands initially had trouble moving but I after I bent them upward slightly, they worked. 

Cover the mess in the front with a nice circle of text and Voila! One book-clock ready for any book lover.

Waiting Game: 2 months.

I've been on the list for two months! Hurray!?

Let's see what happened this month:

- I learned I will most likely need a plasma transfusion during the transplant to reduce the amount of antibodies in my blood. So go donate your plasma and/or blood!

- I continue on with physio 3x/week. I think I am doing well despite the fact that I didn't do as well as 6 weeks ago on my 6-minute walk test. The physiotherapists haven't said anything about it afterward and keep upping my intensities so if they aren't concerned, I will try not to be too. I am at at the point where I can recognize everyone but don't know anyone's name. They had a potluck party last week and someone asked if I was going. I had to sadly tell them that the people with CF were not invited (it said it specifically on the notice...'CF patients are not able attend due to hospital policy'). Stupid policy. I want Christmas cookies too!

- Isaiah and I have been trying to do all the touristy things around Toronto. We visited the pandas at the zoo when my parents were down, have gone to some musicals, and keep visiting museums. There is no shortage of stuff to do in the city.

- There is nothing new from my CF doctors. They just tell me to keep doing what I'm doing. I had a visit today and I gained a little weight and my lung function remained stable. The doctor said she feels comfortable with me going bi-monthly as I will have my transplant clinics the other months. It's fine with me to only have one doctor appointment a month!

- I learned today that Ont will no longer directly bill NS for meds. They changed the policy last month and no one thought to mention it to me until now. This means I either need to get the meds shipped from NS or pay out of pocket for them here and file with the government to get reimbursed. Thankfully, I called my pharmacy in NS and they will ship my CF meds out to me so I'm not panicking but I don't understand why they make things as hard as possible for people. I don't know what happens with my transplant meds once I need those although my guess is that I will have to pay upfront and get reimbursed later. As if I want to have to think about paying for thousands of dollars worth of medication immediately after a surgery. Thankfully the CF nurse in NS is amazing and is going to find out for sure what is going on (no one had told her either, we seriously need better patient education).

- I have stopped having the dreams where I miss the call. Instead I've had a few where I am hanging out in NB or NS and suddenly realize that I need to be in Ontario for my transplant and how did I get here and what happens if I get the call!? I'm not sure if those dreams means that my subconscious wants to be back in the Maritimes or if it is just a new way of waking me up in a panic in the middle of the night. Either way it's pretty annoying.

- I no longer have intense panic about unknown phone numbers. Just a mild amount of panic. Unless I miss a number like I did when we were at George Strombo taping and then I'm back in intense panic mode. I had no message so I was pretty sure it wasn't the hospital (you would think that Isaiah not getting a call and my pager not going off would put me at ease but it didn't. Sometimes the mind refuses to think rationally). I only unpanicked when I googled the number only to realize it was a stupid 'I've won a cruise!' call. I really need to put myself on the 'no call list'.

-I am not discouraged about not having the call yet. Maybe by month 6 or 7 I'll be wondering when it is my turn but right now I still feel pretty good and have lots of visitors and activities to look forward in the next month. The average wait is 8 months so I could be here for awhile.

That's pretty much all. Who knows what exciting new developments month 3 will bring!

Questions.

Imagine you have a permanent disability or illness, just pick one at random (Let's hold the discussion between a disability and illness for a later date).  For some of you, just think about your life. Now answer the following questions:

Do you think disability is just a state of mine? If you had the option to spend one year bedridden in exchange for getting rid of your disability, would you? Would your life be better if you weren't disabled? Do you think your disability or illness has made you a better person?

These were questions that were asked at the start of the 'Disability Talk Show' podcast that I listen too (yes I realize that half of my blog posts are just responses from various podcasts). The host of the show (who has albinism) asked his current guest (both who also have a permanent disability) those questions and they laughed awkwardly and answered in the briefest possible way before moving onto other topics. No one, except the host, wanted to discuss the questions in-depth.
So let's get into it.

People don't seem to ever want to discuss the possibility that maybe not having a disability would mean you would have a better life. I understand, it is a complex topic. No one wants to define what a 'good quality of life' means to another person because when we start judging that a person doesn't have a life we think is worth living, we take away their rights as a person. That is everything the disability movement has worked hard to fight. However, we should able to let people talk about how having a disability has made their life better or worse.

Would my life be better if I didn't have CF? My initial reaction is absolutely. No question. It would mean I could have kids, owalk without getting short of breath, and have a longer life expectancy. But then does having a better physical quality of life translates to my life being 'better' as a whole? Quantity doesn't trump quality and I've had a pretty kick ass life so far. Would removing CF mean that I have the same level of psychological, spiritual, or emotional health? I don't know. Maybe I would be at a job I hate with no good friends. Maybe I would be hocked on drugs or gambling. Or maybe I would be just as awesome. It is impossible to tell.

I also find it difficult to answer 'has having CF made me a better person?'. My immediate response is no. I am not in group of people that view their disability as a 'gift' or a 'learning experience'. It sucks and I would give it up in a heartbeat. I would, without hesitation, spend a year bedridden in exchange for getting rid of it for the rest of my life. And I don't think I would become a better or worse person than I am today.

However, if I never had the disability, would I be the same person? No. As much as I don't want to admit it, having a disability has affected how I see the world so if I never had that lens, I have no idea who I would be. Would I still have the same drive to experience as much as possible? Would I still have a never quenching thirst to learn new things? Would I see disability and discrimination in the same way? I have no idea.

The only way to be able to answer any of these questions would be if we all got a 'do over' to see how our lives would be different with changes. We don't get to do that so all we can do is wonder 'what if'. I think that some people are uncomfortable talking about how their lives, or a loved ones life, would be better without a disability because it might undermine the life that they do have. It can also be a coping mechanism to say that a person is 'better off' because of their disability. I don't think it is such a bad thing to hypothesis 'what if'. In the same way my life would be easier if I had a million dollars, I know rationally my life would be easier if I didn't have CF. Admitting that doesn't takes anything away from my life or make me feel worse about myself. I'm not distressing over the fact that I don't have a million dollars in the same way that I don't distress over the fact that I have CF.

We, as a society can't have it both ways. We want to find a cure or a reason for every disease and disability without wanting to acknowledge that people's life would be easier without them. If we are honest about how much the disease sucks, then people will understand why finding a way to fix it is important. If we hush over the bad parts, no one will try to make things better because everything is fine. So, can we stop making it a bad thing to admit that having CF (or whatever disability) sucks and that people would better off without it? Doing so doesn't make me or anyone else less of a person.

Homemade ornaments.

Happy St. Nicholas Day! 

After making my Christmas cards, I had a few left-over cards that survived the card slaughter. Since our Bamboo Christmas Tree is a little bare, I thought I should make a few light ornaments that the branches could actually hold (most of the ornaments are shoved to the middle as they are heavy).

Step 1: Gather paper to use

Step 2: Cut out 4 identical symmetrical shapes (I cut out one and used it as a template for the other 3)

Step 3: Fold all in half and then glue together so the white sides match together evenly. it turns into a stack until the last one which glues to the side of the first to make it 3D.

Step 4: Poke a hole in the top with a needle, thread some string through and voila! A ornament that won't make your tree fall over.

A circular version.

Christmas Cards!

It's card making time!

Trees and ornaments seem to be the theme for this year.

There is now glitter all over the apartment!

My 'wild Christmas' themed cards.

And of course, making envelopes. Sometimes I think that is my favorite part.

Also, don't forget to leave your shoe out for Saint Nicholas tonight! (It is possible a certain someone will be getting cookies in their shoe tomorrow as I was too lazy today to leave the apartment to get candy. )

Peanut butter chocolate chip cookies are better than sugary candy right?? Right.

♫ Oh Bamboo Tree! ♫

♫ ♫♫ Oh Bamboo tree! Oh Bamboo tree! ♫♫♫

Thy plastic leaves are so shiny

Oh Bamboo tree! Oh Bamboo tree!

Thy plastic leaves are so shiny

When thy branches happen to fall

I have no worry, because I can put you together and all

Oh Bamboo Tree! Oh Bamboo Tree!

Thy plastic leaves are so shiny

Oh Bamboo Tree! Oh Bamboo Tree!

Much pleasure thou can’st give me

Oh Bamboo Tree! Oh Bamboo Tree!

Much pleasure thou can’st give me

How often has a fake bamboo tree

Be used to bring some Christmas glee?

Oh Bamboo Tree! Oh Bamboo Tree!

Much pleasure thou can’st give me

Oh Bamboo Tree! Oh Bamboo Tree!

Thy blue lights shine so brightly!

Oh Bamboo Tree! Oh Bamboo Tree!

Thy blue lights shine so brightly!

They may look a bit tacky

But they were the ones that were not pricey

Oh Bamboo Tree! Oh Bamboo Tree!

♫♫♫ Thy blue lights shine so brightly! ♫♫♫

Our Christmas tree! I may have driven Isaiah crazy with my singing while hanging the ornaments.

Language of Illness

Yesterday I listened to a super interesting podcast about the language of cancer and illness in general. The narrator, who had cancer, hates battle metaphors to describe illness about as much as me and wanted to find something better.

I hate the battle metaphor because illness is complicated and confusing and while I understand that people need a language they can use, I think we need to find something better to talk about it. Nothing that frustrates me more than hearing 'lost their battle with...disease x' or 'bravely fought a good fight but lost to...disease x'. We don't use that to talk about a heart attack (their heart defeated them) or a car accident (they lost their battle with the tree), so why is it ok to use with cancer or other diseases?

I find it makes the person a loser when they die. The 'fight' metaphor might work for some people but for those who are living with a chronic disease, there is no 'win' option. There is no possibility of getting rid of the disease so losing is the only option. (p.s. the disease of the person dies with the body so it is actually more of a stalemate no?). The documentary exploring language around illness seemed like it was made just for me.

The documentary mentioned that the first time the battle metaphor with cancer was publicly used was when President Nixon declared ' a war on cancer' and has been going strong ever since. The narrator talked to several professionals to see if they could come up with a better metaphor to describe illness. His main problem with the terminology is that when he had cancer, he didn't want to be fighting part of his own body and didn't like being told to see it as something to hate. 

A doctor of palliative care was interviewed who said that the fight terminology is often used because it can be a way for family to recognize the struggle the person with cancer has had. She did say the 'living alongside' might be more appropriate as people often 'live with illness' for a long time before it becomes terminal. I do like that idea as it is true that illness is more about 'living with' an illness rather than a full on attack. I see all my medication, aerosol masks, and physiotherapy as something that goes along with having CF rather than a way of attacking the disease so I would be happy with that metaphor. "Died after living with CF" doesn't sound too bad.  

The narrator then talked to a director of marketing for cancer research who thought that using cancer as the 'enemy' in advertising was great. The narrator tried to explain that the cancer had been part of him and he didn't want to declare a civil war on his body. Also, there was nothing he could actually physically do to fight the cancer as he couldn't cut it out himself or give himself chemo. She thought that most people appreciated their ads and saw no problem with it as they were a way to motivate people in keeping with their treatment. I guess it might help some people but I don't think turning cancer into the boogyman is a good approach. (One of their ads was "Cancer is Coming to Get You!!!", is that not terrifying to anyone else?) 

The narrator then talked to a scientist in cancer research who said the metaphor he thought worked best for the actual cancer cells was 'an orchestra' as there are many proteins and enzymes that all work together to create growth and life. Cancer happens when one protein in a cell is 'playing wrong' causing more growth than usual. He said if one member of your orchestra is playing out of tune, you wouldn't go in and bomb it, you would simply re-tune the instrument. Chemo and other treatments could be seen as a way of 're-tuning your cells'. I also like this way of approaching illness. It makes people sound a bit like machines that 'need a tune up' but seeing as I have literally called some of my hospitalizations 'tune ups', I can't find a problem with it. I would be happy with "Died because she was out of tune" (I don't think I will be getting any requests to write obituaries after this). 

I think the best conversation was when the narrator spoke to a theologian who said that when people talk about battling, they use the same terminology as when they are discussing something evil. This has created a connection that cancer or a illness is evil.  But while cancer and illness are unfortunate, they are not evil. They just are. The same way that leaves dying in the fall can be seen as sad or unfortunate but you wouldn't say that it is evil. She said it all comes down to deciding if the illness is something is evil that must be battled at all cost or is it a dying or change that is a part of life that we can grieve? I think this is an excellent perspective. Illness is something that happens and yes it sucks but that doesn't make it inherently wrong.

The narrator decided in the end that the best metaphor for him is to 'kiss his cancer good bye'. Because it recognizes the grieving and loss that happened without making him hate his body. That can be done when the illness is acute but I won't be 'kissing my CF good bye' anytime soon. It was an interesting discussion that I think we all need to have. The language and terminology we use in life is important and it should be just as important when discussing death or illness in general. Let's stop using the battle metaphor and start using something that is less demoralizing. Whether it be 'living with' or 'need a tuning' or something else that I haven't thought of.

Happy December!

December 1st! Wow, it's been two months. Still a little hard to believe.

Time to dig out the advent candle!
 

Yes I moved this here.